Rebecca battled five brain tumours and passed away on 25th January 2015. She was 33. When she was diagnosed with her second brain tumour, Rebecca and John, her teenage sweetheart, married quietly on her birthday. The following year she was in remission and they renewed their vows in a celebration of her life. When the devastating news came that her illness was terminal, despite numerous operations and many gruelling months of chemotherapy and radiotherapy, Rebecca planned her own funeral and even filmed herself giving a reading which was shown at the service.
Her mother Marilyn tells her story …
Rebecca was a normal, happy child, the second child we longed for and had feared we might never have. We already had a beautiful 13-year-old daughter, Sarah, when Rebecca arrived during a blizzard! Rebecca loved having an older sister and always said that as well as being her sister, Sarah was her best friend. When Sarah herself had a daughter, Rose, Rebecca was over the moon and the two grew very close.
Rebecca grew up a happy child and was quite a homebody. She went to St Stephen’s C of E Primary School in Audenshaw. From there she went to Droylsden High School followed by Ashton 6th Form College. Even though she had been diagnosed with dyslexia she still went on to attain a 2:1 honours degree in literature at Manchester Metropolitan University.
Rebecca had a couple of jobs before taking up an administration post working in the Undergraduate Office at the University’s School of Dentistry before finally working in the Postgraduate Office.
In December 2007 she started having strange little attacks where she didn’t seem to be present. Once, when this happened at work, someone suggested she should go to the nearby hospital. To begin with it was thought she might have late-onset epilepsy, which can happen in your twenties. It was decided, to be on the safe side, she should have a scan but the paperwork went missing and there was a delay before the scan was done. We had a call the night after the scan to say that something had been seen on her brain and were given an appointment at Hope Hospital in Salford to see Mr Sofat. Rebecca had surgery to remove what they initially said was a low-grade tumour and the doctors didn’t seem too concerned. However in August, a few months after the surgery, she started to feel unwell again and knew there was something wrong.
A further scan revealed that that tumour had grown back. Rebecca had another operation and, this time, the tumour was diagnosed as an aggressive stage IV ganglioglioma, rarely seen in people of her age. The tumour was removed and Rebecca began treatment. Starting in October 2008, she had 37 radiotherapy sessions to her head and spine plus chemotherapy every week and additional chemotherapy for a further 6 months.
Rebecca was due to marry John the following year but instead they brought it forward and had a small wedding on 20th December, Rebecca’s birthday, and we celebrated afterwards with a buffet at the family home.
Although it made her very ill and she lost her hair, Rebecca coped brilliantly with her treatment. If she was able, she liked to come and stay with us once a week to cuddle up to me in bed. We are a very close family and we coped because we always believed she was going to pull through. I used to take her to the hospital every day and we just got on with it. She did have bad times of course and was particularly nervous the week before a scan, worrying if they would find something. The good thing about her Oncologist, Dr Rau, though was that Rebecca got her results the same day.
By the summer of 2009 the doctors were more or less saying that things were going to be OK. Because they had not been able to have the wedding they initially planned, Rebecca and John renewed their vows in September with a meal followed by a reception for over 100 people. It was a celebration of her life, a lovely day and she looked beautiful in her wedding dress.
Rebecca was able to do lots of things she really wanted to do such as spending a day as a keeper at Chester Zoo, going to Lapland and visiting Disney World. She and John even looked into the possibility of having children but were not able to because of all the treatment.
Our daughter was able to go back to work at the University, where John also worked. There were some good times: she and John won Cosmopolitan magazine’s Ultimate Love Story competition, they had breakfast at Number 10 Downing Street and were interviewed on the radio. She was so positive and used to talk to quite a few people who also had brain tumours. Unfortunately they are all gone now.
In October 2012 she went for a scan which showed the tumour was back. She had yet another operation, her third, and started chemotherapy. There was also a fourth operation on her skull as it had not repaired well but Rebecca managed to get through this and went back to work once more.
After that, every time she had a scan she was more fearful. In 2013 we were on holiday in Whitby, which was one of Rebecca’s favourite places. She had gone back to Manchester for a scan and we got a phone call to come home and be with her as the tumour had returned. She underwent more surgery and was back on the chemotherapy and, despite the fact that she hadn’t healed very well, the oncologist wanted to get her back on radiotherapy as soon as she was able to have it. Following this, she started to have stroke-like symptoms so we went back to Hope Hospital on numerous occasions. Eventually a further scan revealed there was yet another tumour and, in May 2014, we were told there was nothing more they could do for her. Despite this, her oncologist at The Christie Hospital in Manchester refused to give up on her and she had more chemotherapy for a while. She suffered more little turns and had further epilepsy-like symptoms.
By this time Rebecca’s mobility was badly affected and it was hard for her to walk. Along with John, we cared for her in their home in Gee Cross, Cheshire, taking advice from a Macmillan nurse. A hospital bed was delivered and she slept downstairs. Things went downhill. Rebecca was often confused and started going to the local Willow Wood Hospice for physiotherapy and massage which did her some good. By this time her oncologist was really concerned. Eventually she had to use a wheelchair and things got so bad that she spent a month in the hospice and, for a time, we didn’t think she would make it out of there. She had six more sessions of radiotherapy, going to Christie’s and back again in an ambulance, but it made her extremely ill. She experienced very bad seizures, but about a week after the radiotherapy sessions had stopped she started to improve and was able to go home.
At home, she was unable to walk and her left side was very weak. Being left-handed meant this was particularly difficult for her. She had physiotherapy once a week to try to help with her core strength and was on high doses of steroids which she hated because of the side effects. The steroids were cut down gradually but this led her to having a series of mini-strokes. By this time we had help from district nurses and day-time carers. I would often stay the night on a little bed beside her, as would her sister and dad. We celebrated her birthday at her home on 20th December and she came to our family home in Audenshaw for the 25th but it was very difficult as she was uncomfortable and in pain. Very sadly, the day after she couldn’t remember anything about Christmas.
She had started to organise a big party for John’s 40th birthday (on 10th January), before she became ill again, with a Marvel Comic fancy dress theme. She was happy for him but far too ill to be there herself.
Soon her medication had to be delivered intravenously and John managed to get a larger hospital bed so that we could cuddle her but she was slowly slipping into a coma. We were all with her (including her precious cats Bean and Pooky) as she passed away in the arms of her husband.
There are not enough words to express our thanks to John for what he did for Rebecca over her last few months. Whatever he could do to make life easier for her, he did. If he couldn’t get it via social services, a Macmillan nurse or the doctor, he bought it. We think he had his own special delivery service from Amazon. He made her last few months at home very special and we will never forget. His love for her shone through in everything he did.
We have many happy memories, particularly of all the times we travelled to Disney together. She loved Disney so much. Another favourite place was Whitby and I also have fond memories of a trip we paid to Castle Howard and, although she had the spectre of a serious brain operation hanging over her, I can still see Rebecca and John running and laughing while playing hide and seek in the beautiful gardens. Rebecca was also able to enjoy a very special long weekend with Sarah in Harrogate and two family weekend breaks before her illness progressed. Memories to be treasured forever in our hearts.
Before she died, Rebecca had planned her funeral which took place at St Lawrence Church, Denton. She made a video recording of herself reading “You Want A Physicist to Speak at Your Funeral” which was shown at the service. It includes the words: “You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.” At the end of the reading, she just smiled.
She was taken to the church in a carriage drawn by white horses and the music included Circle of Life from the Lion King, I Wanna Be Like You from Jungle Book and Good Riddance – Time of Your Life by the band Green Day. The church was full and many people made donations in her memory to Brain Tumour Research. She was interred in a family plot.
I write a letter to Rebecca every night as, until she could no longer move or speak, we used to talk everyday about everything. I have filled one journal and the one I am writing in at the moment used to belong to Rebecca. She only wrote a few things in it back in March 2013 as she was been treated for her third tumour. She wrote: ‘I am not scared of dying, being told that I am going to die scares me. How will John and my family cope?’ She actually told me that at least she didn’t have to go through the trauma of losing her mum and dad. We have been so privileged to have Rebecca in our lives. She will live on forever in our hearts and minds.
Brain tumours kill more children and adults under the age of 40 than any other cancer ... yet just 1% of the national spend on cancer research is allocated to this devastating disease. This is unacceptable!
Research is our best hope and the charity Brain Tumour Research stands out with its commitment to fund dedicated research centres.
Marilyn Shone
May 2015